Posts
Mid-1980s-forward--Some bruises along the way as AMI NYS asserts itself in Albany
September 21, 1985—I went to annual conference of AMI-NYS at Holiday Inn in midtown Manhattan (I think it was just renamed Days Inn at the time). I stood outside the main meeting room with a psychiatrist, Dr. Bill Turner, from Long Island, who told me his theory that a marker for schizophrenia was baldness in the father. So when we finished I looked through the porthole window into the meeting room and looked over the sea of men, mostly older, white haired, paying attention to the speaker--and almost none was bald. I meant to tell the doctor afterwards. You never know.
About 1986--AMI Action and the fire in the trash box--this was a subgroup, not a regular affiliate in Albany, that met at this time and was partly subversive of the AMI NYS board of directors. Led by Gerry Comfort, they planned advocacy with less restraint than the AMI board. They wanted to attack every evil imaginable—the mail system, unemployment, several agencies of state gov't not closely related to mental illness, the health dept., insurance, drug abuse agency, etc. They called for direct action and came in conflict with AMI board policies. Once when we on the board were in a meeting with Cmr. Surles, Gerry lit up the annual report of the NYS Office of Mental Health, set it afire and put it in an outside trash box near the building. That took the cake. Cmr. Surles asked me if I needed an escort out of the OMH building because of our “disobedient, raucous” colleagues with AMI Action
October 5, 1987--Prayer walk comes to grief in the snow--Harriet Comfort organized the prayer walks (marches) in the 1980s and into the '90s that AMI members paraded in. Mame Lyttle remembers them: Bishop Hubbard and Episcopal Bishop Ball proudly marching by the Capitol at the head of followers paying respect to those suffering from mental illness. Sudden snowstorm the day of the march, Oct. 5, forced its cancellation. Nobody imagined a deep snow that early. Chris Carabateas, an activist who lived out in Nassau, had no electric power for a week or more, as the lines were down that long.
Court suit over High Tea 1987—Harriet lost a bid to be president of AMI NYS in 1987 and so quit the board. This falling out led the board to sue over her refusal to grant AMI a share of High Tea funds that year. Both sides got lawyers who did little but wrangle for a year. At one point William Snavely, AMI national president, a former Navy admiral, I think, came to Albany to solve the dispute. He went home with no luck at all for a reconciliation. Our suit ended in stalemate, with no satisfaction to either party. And it led to disaffection against AMI by several local affiliate members that lasted over 10 years.
In Feb. 1988 at a rally in Albany we were to release dozens of green balloons together high over the Capitol as a sign of unity, at the end of speeches that day. Every now and then someone would lose grip on the balloon and they began sailing one by one up in the sky while speeches went on and we all admired the show.
1988--An early foray into the legislative chambers to make our case. Went to see Joe Lentol, a Brooklyn assemblyman,who had his staffer, Joe Giamo, meet us. We got through 15 minutes telling this fellow all about us and what we do and the staffer asked: What army did you say you were from?
March 2, 1989 I was called in by Carol Obloy, AMI's first OMH contract officer, and signed a three year deal for AMI to set up business in Albany. I had taken over the presidency last fall from Phyllis Gerber, the long time leader with Muriel Shepherd who got AMI going in the early 1980s .That was our big move to respectability in Albany, to have a home after previous board meetings around the dining room table in the Gerbers' home and in a conference room at RSS headquarters.
Our job was to bring all the local AMI support groups together, do outreach and education to our members and the public and raise public awareness about mental illness around the state. It was a magnificent moment. We rented office space from the Mental Health Association in Albany County, then headed by Brian Klim, who actually designed our rooms on the second floor of the former car dealership at 260 Northern Blvd, off downtown Albany. NAMI is still there. We could walk to and from the Capitol and state Legislative Building from there and had allies in the building from the start—the mental health association, ACCLAIM (now ACL), headed by Steve Greenfield, and Potpourri consumer social club downstairs run by Harvey Rosenthal, which is still there.
We were to hire a director and secretary and equip their offices with a desk and soft chair; buy two IBM typewriters, some plain tables and side chairs for meetings and to fill the rooms up. On April 7 John Rosebrook and I bought tables and chairs at BJs Wholesale Club, carted them in the back of his van and lugged them upstairs to the office. We leased an early design copy machine that broke down repeatedly. We hired a secretary who couldn't type and was soon fired. We interviewed Carol S for executive director and she started work March 27. We soon hashed out strategies for political action with our new-found allies.
September 16, 1989—The famous jazz concert that flopped—At the same time that we're getting going in Albany we signed on to sponsor a jazz concert at the Palace Theatre in Albany as a fund raiser. This was led by Jean Shaw who had helped Capital District Psych Center the year before and presented herself as a grand impresario. She gathered a team and with our support signed up major bands like the Duke Ellington quartet, (and was it Count Basie?), plus a leading female jazz vocalist whose name escapes me, and the Shaws, a local piano duo. She had us solicit AMI members statewide to buy tickets at $25 or more apiece, estimated to bring in over $50,000. This was coupled with a black tie dinner at the Hilton Hotel downtown Albany on Sunday night with the commissioner and other luminaries there. The week of the concert there were fewer than 100 tickets sold and we cancelled at once, despite having paid the big name band and woman singer thousands of dollars up front. We did hold the black tie dinner and came out about $20,000 short, as I remember. Just got burned, that's all.
The characters we met—Jesse Nixon, director at CDPC. Really a nice man. But one wonders. Once he punched out a pizza delivery man outside the front door of the hospital. Pizza man had him arrested. I think he pleaded guilty, and walked. Jesse had a few more run-ins later on in his long tenure there.
And our own staff at AMI were mostly good souls, some young and untested, none of whom was paid a lot. A young man and woman worked together for us and soon were married. He had exceptional computer skills and left to work his way up at state OMH to become head of their research. Another, Ruth Foster, has become a top lieutenant for Families Together, working for childrens mental health in Albany. John N lost his wife to illness suddenly and had to leave us. Then again, a fellow we hired as secretary was caught walking off with some of our office equipment and we had to fire him. (by Roy Neville)
Thursday, August 12, 2010
Saturday, August 7, 2010
ECT--Can't the consumers get over it?
The fact is, electroshock therapy may be the most important treatment we have. Why does it divide consumers (who call themselves patients/survivors on this issue) and families so badly about its use?
Electroshock therapy (ECT) is the treatment of choice for many psychiatrists, when medicine and psychotherapy have failed, for someone suffering from severe mental depression or schizophrenia who is in the most urgent circumstances.
Its power, I believe, comes from the recognition that this is the last resort. It's the one thing that can pull you through, as nothing else can, when you're suicidal and seem possessed of demons. Parents have watched their teenage or adult child spiral downhill in a hospital bed to literally go out of their mind, refuse to eat, become thin as a rail, talk crazy, spout religious fantasies, and not know who they are.
Yet it's still as controversial as lobotomies—sticking needles into your brain. (Did you know they still do that in some circles?) ECT consistently draws a violent reaction from the more vocal members among the consumers, some of whom have personally experienced its effects and felt they were injured. Usually they claim loss of memory or thinking ability or changes in personality and while some of these things may have happened, these functions are known to return. The early radicals who underwent ECT are vocal enough to enlist their followers to continue this line of resistance, however.
Nobody likes to mess with the brain physically, only doctors who are trained in electroshock procedure and its anesthesia, and they want to say it's safe. The rest of us can only imagine what it's like to have clamps slapped on the sides of your head and then be hit with a powerful surge of voltage that shakes the head violently. That's too close to the imagery for violence in an electric chair, and none of us wants to entertain those notions.
These consumer groups repeat the dangers of injury from ECT as if they are legion but rather in modern treatment we find they are very rare, if they exist at all. In the old days procedures were not the same as today, and those administering the shocks wouldn't have been as properly trained nor would the equipment be as safe. But that isn't the case anymore and the evidence is overwhelming that the procedures are safe and effective.
ECT--electro-convulsive therapy--has a checkered past, as most people know, lumped in with lobotomies and other pre-modern medical strikes to try to cure the thinking of madmen and madwomen. In its modern form it's nothing like the early versions that did indeed have victims and created the myths about it that have raised the ire of legions of consumers and their allies.
But this is one of the most useful therapies known in psychiatry, fully established and blessed by the medical establishment—the doctors' guilds (APA and AMA, etc). It's seen as safe and dependable, practiced in numerous hospitals by numerous physicians armed with the latest knowledge and technology about its use. Never mind that they still don't know exactly how it works.
It gives the brain a shock, much like forcing a convulsion, which hardly seems like painless therapy. There is a sudden excitation of brain waves and aftershocks, like the succession of tremors that hit Haiti after the quake. The shocks are administered in a series of up to eight or 10 over two weeks or so, but spaced out, not right on top of one another.
The person being tested is often someone with severe symptoms of depression or schizophrenia for whom medicine has failed. Others take ECT on a maintenance basis; they periodically relapse, receive ECT, and almost miraculously perk up—the evidence supports this.
Despite the evidence, consumers can't get over it. Last September a coalition of patients/survivors in Brooklyn launched a nationwide call to action against forced mental health treatment including drugging and electroshock therapy. They tie these to outworn forms of the medical model of psychiatry, which they find coercive. And anything coercive is too much for them. They demand the right to reject what is imposed on them by doctors and to make their own choices. But isn't this foolish if someone is so sick they are out of their mind, suicidal, unable to appreciate what they doing or saying?
Finally, it appears the leader of the statewide mental health consumer movement in NY, Harvey Rosenthal of NYAPRS, has taken a softer stance. In the love and hate war of words over electroshock therapy, Harvey wrote to the US Food and Drug Administration last January that the consumer movement doesn't oppose ECT any more, after decades of disagreement over this issue. They just want regular inspection of the equipment used and a ban on its use for children and the elderly.
Hear, hear! No blanket condemnation! Don't tell me they have come to their senses. But is the old guard still spouting the same old tales of woe over their treatment at the hands of doctors who ordered ECT. Maybe the organization is marching to a different drummer on this one, thank goodness. (Roy Neville)
Electroshock therapy (ECT) is the treatment of choice for many psychiatrists, when medicine and psychotherapy have failed, for someone suffering from severe mental depression or schizophrenia who is in the most urgent circumstances.
Its power, I believe, comes from the recognition that this is the last resort. It's the one thing that can pull you through, as nothing else can, when you're suicidal and seem possessed of demons. Parents have watched their teenage or adult child spiral downhill in a hospital bed to literally go out of their mind, refuse to eat, become thin as a rail, talk crazy, spout religious fantasies, and not know who they are.
Yet it's still as controversial as lobotomies—sticking needles into your brain. (Did you know they still do that in some circles?) ECT consistently draws a violent reaction from the more vocal members among the consumers, some of whom have personally experienced its effects and felt they were injured. Usually they claim loss of memory or thinking ability or changes in personality and while some of these things may have happened, these functions are known to return. The early radicals who underwent ECT are vocal enough to enlist their followers to continue this line of resistance, however.
Nobody likes to mess with the brain physically, only doctors who are trained in electroshock procedure and its anesthesia, and they want to say it's safe. The rest of us can only imagine what it's like to have clamps slapped on the sides of your head and then be hit with a powerful surge of voltage that shakes the head violently. That's too close to the imagery for violence in an electric chair, and none of us wants to entertain those notions.
These consumer groups repeat the dangers of injury from ECT as if they are legion but rather in modern treatment we find they are very rare, if they exist at all. In the old days procedures were not the same as today, and those administering the shocks wouldn't have been as properly trained nor would the equipment be as safe. But that isn't the case anymore and the evidence is overwhelming that the procedures are safe and effective.
ECT--electro-convulsive therapy--has a checkered past, as most people know, lumped in with lobotomies and other pre-modern medical strikes to try to cure the thinking of madmen and madwomen. In its modern form it's nothing like the early versions that did indeed have victims and created the myths about it that have raised the ire of legions of consumers and their allies.
But this is one of the most useful therapies known in psychiatry, fully established and blessed by the medical establishment—the doctors' guilds (APA and AMA, etc). It's seen as safe and dependable, practiced in numerous hospitals by numerous physicians armed with the latest knowledge and technology about its use. Never mind that they still don't know exactly how it works.
It gives the brain a shock, much like forcing a convulsion, which hardly seems like painless therapy. There is a sudden excitation of brain waves and aftershocks, like the succession of tremors that hit Haiti after the quake. The shocks are administered in a series of up to eight or 10 over two weeks or so, but spaced out, not right on top of one another.
The person being tested is often someone with severe symptoms of depression or schizophrenia for whom medicine has failed. Others take ECT on a maintenance basis; they periodically relapse, receive ECT, and almost miraculously perk up—the evidence supports this.
Despite the evidence, consumers can't get over it. Last September a coalition of patients/survivors in Brooklyn launched a nationwide call to action against forced mental health treatment including drugging and electroshock therapy. They tie these to outworn forms of the medical model of psychiatry, which they find coercive. And anything coercive is too much for them. They demand the right to reject what is imposed on them by doctors and to make their own choices. But isn't this foolish if someone is so sick they are out of their mind, suicidal, unable to appreciate what they doing or saying?
Finally, it appears the leader of the statewide mental health consumer movement in NY, Harvey Rosenthal of NYAPRS, has taken a softer stance. In the love and hate war of words over electroshock therapy, Harvey wrote to the US Food and Drug Administration last January that the consumer movement doesn't oppose ECT any more, after decades of disagreement over this issue. They just want regular inspection of the equipment used and a ban on its use for children and the elderly.
Hear, hear! No blanket condemnation! Don't tell me they have come to their senses. But is the old guard still spouting the same old tales of woe over their treatment at the hands of doctors who ordered ECT. Maybe the organization is marching to a different drummer on this one, thank goodness. (Roy Neville)
Monday, August 2, 2010
Shyness, sadness, gambling, sex offenses--are they mental illnesses?
There's a man who has written a book about shyness and contends it's a normal human trait, not a mental illness
There's another book out about sadness, feelings the author says have been associated throughout history as a normal reaction to loss—not the finding of modernists who want it labeled a mental illness.
How about binge eating...temper tantrums...gambling—are they mental disorders?
And then we have hoarding, compulsive shopping, alienation from parents, sex offenses. Where did these all come from?
It's really baffling to onlookers and to those with some of the kinds of odd habits like these afflicting humans. People don't get treatment who may need it. Does the medical profession have it all down straight?
They think they do—at least the American Psychiatric Association does. Shyness, sadness and a few other common traits and habits are said to be getting a working over in the new Diagnostic and Statistical Manual of Psychiatric Disorders (the DSM-V, not issued yet), and it's stirring the juices.
It's important for the people developing the DSM-V to get it right because the document is used by the mental health establishment when treating patients and helps insurance companies decide what disorders to cover. It serves as well as for clinicians, courts, prisons, drug companies and agencies that regulate drugs.
And you would think someone with these conditions wants to know if he or she is normal or less so. The book by Christopher Lane, called “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He shows how drug company ads have manipulated this to turn ordinary shyness into social anxiety disorder., something of a national emergency.
And another book, “The Loss of Sadness,” by Allan Horwitz and Jerome Wakefield, finds that sadness is often wrongly judged as depression, a diagnosis that has now become epidemic around the world. “Those judgments fail to distinguish between major depression, devastating to its sufferers, and lesser episodes of sadness,” they argue. “Episodic sadness has always been a socially approved means of adjusting to misfortune and much is lost when it is misread as a depressive disorder.”
What's in a diagnosis anyway? Is it something that hits you once or twice or does it have to happen often enough to lay you flat—change your personality or mood or outlook on life? Feeling blue now and then is not the same as depression. The new DSM-V is said to have nine symptoms that go along with that and weighs them as to seriousness, but even this is criticized as not faithful to reality.
There must be pressure from drug companies to add fringe diagnoses into the big book and from insurers to keep them out. The draft document is reported to leave out obesity as a formal diagnosis, as some have proposed. Obesity, you can argue, is metabolic. And it appears to be definitely a medical problem. But no-go in the big book.
They once called cigarette smoking a mental disorder. I suppose much the way marijuana smoking is thought of as an addiction. So--What's addictive behavior and what's a mental disorder?
Not long ago the NAMI NYS board of directors was confronted with the issue of the state putting sex offenders in with mental patients in some of the state hospitals (which they still do). The members wanted to object to this but weren't sure if sex offenders basically had an addiction problem or a severe personality distortion (or both). Some thought these offenders should be put in drug treatment facilities, not the hospitals, but this didn't happen. It's still not clear about sex offenders.
Internet addiction doesn't sound like a medical problem but it could be like other compulsive habits like gambling and binge eating or anorexia. These and other obsessive-compulsive habits are given sway in the DSM. Then there are “night people” who compulsively stay up at night and can't go to sleep and who don't seem to qualify as mentally unsound. Their brains would seem to not be working just right either.
Now sex addiction gets us into some serious business, even if it's not criminal behavior. There are a variety of these disorders already listed in the big book but until they go off the end of the scale, there doesn't seem to be much the docs do about them. People with these disorders deserve help and counseling. Some are sex offenders and some are child molesters who get hounded by fellow citizens, driven from neighborhoods and live with the scarlet letter of shame on them for much of their lives.
On this topic there's a common habit called masturbation, that upsets people when they think it might be mental illness. Here's an illustration: This guy comes up to me and says he has a mental illness he can't get rid of. “What mental illness is that?” I asked. And the talk came around to the fact he masturbates a lot. “What makes you think that's mental illness?” I asked. “I know it is because I can't get it out of my mind; it's a habit and it keeps coming back every day over and over. I'm not normal and this is mental illness. Do you know anybody who can treat it?” he responded
“Yeah,” I said, “it's not mental illness. It's just nature. You're like everybody else. You have a habit you can't get rid of, so what? The difference is that we're all weak and lead imperfect lives and will fall short in some things and feel we might have something wrong.
“You want to talk about an illness—think of schizophrenia. It hits you like a bomb—you'll know when it hits you. And you don't get a little schizophrenia—it's like pregnancy. You either got it, or you don't." (Roy Neville)
There's another book out about sadness, feelings the author says have been associated throughout history as a normal reaction to loss—not the finding of modernists who want it labeled a mental illness.
How about binge eating...temper tantrums...gambling—are they mental disorders?
And then we have hoarding, compulsive shopping, alienation from parents, sex offenses. Where did these all come from?
It's really baffling to onlookers and to those with some of the kinds of odd habits like these afflicting humans. People don't get treatment who may need it. Does the medical profession have it all down straight?
They think they do—at least the American Psychiatric Association does. Shyness, sadness and a few other common traits and habits are said to be getting a working over in the new Diagnostic and Statistical Manual of Psychiatric Disorders (the DSM-V, not issued yet), and it's stirring the juices.
It's important for the people developing the DSM-V to get it right because the document is used by the mental health establishment when treating patients and helps insurance companies decide what disorders to cover. It serves as well as for clinicians, courts, prisons, drug companies and agencies that regulate drugs.
And you would think someone with these conditions wants to know if he or she is normal or less so. The book by Christopher Lane, called “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He shows how drug company ads have manipulated this to turn ordinary shyness into social anxiety disorder., something of a national emergency.
And another book, “The Loss of Sadness,” by Allan Horwitz and Jerome Wakefield, finds that sadness is often wrongly judged as depression, a diagnosis that has now become epidemic around the world. “Those judgments fail to distinguish between major depression, devastating to its sufferers, and lesser episodes of sadness,” they argue. “Episodic sadness has always been a socially approved means of adjusting to misfortune and much is lost when it is misread as a depressive disorder.”
What's in a diagnosis anyway? Is it something that hits you once or twice or does it have to happen often enough to lay you flat—change your personality or mood or outlook on life? Feeling blue now and then is not the same as depression. The new DSM-V is said to have nine symptoms that go along with that and weighs them as to seriousness, but even this is criticized as not faithful to reality.
There must be pressure from drug companies to add fringe diagnoses into the big book and from insurers to keep them out. The draft document is reported to leave out obesity as a formal diagnosis, as some have proposed. Obesity, you can argue, is metabolic. And it appears to be definitely a medical problem. But no-go in the big book.
They once called cigarette smoking a mental disorder. I suppose much the way marijuana smoking is thought of as an addiction. So--What's addictive behavior and what's a mental disorder?
Not long ago the NAMI NYS board of directors was confronted with the issue of the state putting sex offenders in with mental patients in some of the state hospitals (which they still do). The members wanted to object to this but weren't sure if sex offenders basically had an addiction problem or a severe personality distortion (or both). Some thought these offenders should be put in drug treatment facilities, not the hospitals, but this didn't happen. It's still not clear about sex offenders.
Internet addiction doesn't sound like a medical problem but it could be like other compulsive habits like gambling and binge eating or anorexia. These and other obsessive-compulsive habits are given sway in the DSM. Then there are “night people” who compulsively stay up at night and can't go to sleep and who don't seem to qualify as mentally unsound. Their brains would seem to not be working just right either.
Now sex addiction gets us into some serious business, even if it's not criminal behavior. There are a variety of these disorders already listed in the big book but until they go off the end of the scale, there doesn't seem to be much the docs do about them. People with these disorders deserve help and counseling. Some are sex offenders and some are child molesters who get hounded by fellow citizens, driven from neighborhoods and live with the scarlet letter of shame on them for much of their lives.
On this topic there's a common habit called masturbation, that upsets people when they think it might be mental illness. Here's an illustration: This guy comes up to me and says he has a mental illness he can't get rid of. “What mental illness is that?” I asked. And the talk came around to the fact he masturbates a lot. “What makes you think that's mental illness?” I asked. “I know it is because I can't get it out of my mind; it's a habit and it keeps coming back every day over and over. I'm not normal and this is mental illness. Do you know anybody who can treat it?” he responded
“Yeah,” I said, “it's not mental illness. It's just nature. You're like everybody else. You have a habit you can't get rid of, so what? The difference is that we're all weak and lead imperfect lives and will fall short in some things and feel we might have something wrong.
“You want to talk about an illness—think of schizophrenia. It hits you like a bomb—you'll know when it hits you. And you don't get a little schizophrenia—it's like pregnancy. You either got it, or you don't." (Roy Neville)
Thursday, July 22, 2010
recovery in psychiatry--part 3
What if a person has no goals?
People at the Collage social club and Ellis continuing day treatment center are being asked about their goals for recovery. It's one of the first questions and it's interwoven with asking them about their dreams, hopes and vision as they learn to get ready for the conversion of their programs to a new one called PROS, or personal recovery oriented services.
In it they'll be expected to work at these goals in individual and group settings with the help and support of others. The program isn't to get going till November. People have to enroll in one of the programs that Ellis Hospital will offer, probably at the continuing treatment site downtown, where classes, workshops, counseling sessions and social and recreational activities can be held.
Everybody is expected to have at least one goal and this ties them to enrollment in PROS. If you reach your goal you can drop out of the program or you can go on to achieve further goals, like education or developing skills you'd like to have, their mentors have told us at meetings.
But what if someone is unable to express any personal goals, has lost the spark to want to achieve something? It's another challenge, another way to look at recovery. You can't recover if you don't have any goals, can you?
There's a very good discussion of goals and how to draw someone out to learn to express them in an article in the July 16 Weekly Highlights on a new website called Recovery to Practice. A shorter version starts below. It's written by Larry Davidson, PhD, and Priscilla Ridgway, PhD, of Yale Department of Psychiatry. It rings true because we don't find our children or their friends in the system talking about goals. They've either given up or never were inspired to shoot for realistic goals. Why hasn't this been addressed before this?
(Davidson and Ridgway:) “This question is raised often by providers who are concerned that the people they work with have given up on whatever hopes, dreams, or aspirations they may have had earlier in life or who have been met with an initial blank stare or a shrug. The process of identifying and setting personal goals provides the foundation for recovery‐oriented practice, however. The question of whether or not people have such goals, therefore, is important.
“Restoring hope--Has this person perhaps become demoralized over time due to repetitive experiences of failures and losses that have been due to mental illness, stigma or discrimination, or a combination of both? Has the person lost hope as a result?
“It can be extremely difficult to have a mental illness, and extremely challenging to carry on one’s life in the face of it. It also may be hard to keep picking up the pieces time and time again when things fall apart, or to continue to believe that the future might be any better than a bleak or desperate present. The presence of a basic sense of hope is crucial to a person identifying any goals for the future. When hope has been lost, it can and must be restored as an essential basis for the person’s active engagement in recovery, and in the central role of identifying and pursuing personally meaningful goals.
“The restoration of hope can come about in a variety of ways, including through the activation of spirituality and faith, experiences of pleasure, and supportive and inspiring social relationships. When a person has lost hope and/or faith, it is crucial that other people continue to carry hope for that person until a time that he or she begins once again to believe that life can get better. Peer staff, who can provide tangible and credible evidence of the possibility of recovery, can be especially effective in instilling hope through their function as role models.
“Regaining interests--It is possible that through the combination of socialization and the lack of means to pursue their interests, people may lose any sense of what they might find interesting or enjoyable. In this case, helping the person to get back in touch with what interested him or her, or what he or she enjoyed, prior to becoming ill may be a useful place to begin the process of re‐igniting or” jump starting” his or her passion. There also is an array of tools, including interests and strengths assessments, that might help the person to recall those things that he or she had found pleasurable or meaningful in the past.
“Finally, there can be no substitute for actual life experience in re‐igniting, or eliciting for the first time, a person’s interest,” Davidson and Ridgway point out. “For some people, simply talking about participating in an activity is just as likely to raise anxiety and introduce doubts as it is to whet his or her appetite for involvement. Especially for people who have become accustomed to viewing life as if from a distance, as something that happens primarily to other people, it may require both encouraging and accompanying the person for him or her to feel comfortable trying new things."
The authors go on to discuss the possibility of co-occurring depression and achieving trust so the person is comfortable enough to share personal information. These and other useful insights are found on the website: http://www.dsgonline.com/rtp/resources.html. (Roy Neville)
People at the Collage social club and Ellis continuing day treatment center are being asked about their goals for recovery. It's one of the first questions and it's interwoven with asking them about their dreams, hopes and vision as they learn to get ready for the conversion of their programs to a new one called PROS, or personal recovery oriented services.
In it they'll be expected to work at these goals in individual and group settings with the help and support of others. The program isn't to get going till November. People have to enroll in one of the programs that Ellis Hospital will offer, probably at the continuing treatment site downtown, where classes, workshops, counseling sessions and social and recreational activities can be held.
Everybody is expected to have at least one goal and this ties them to enrollment in PROS. If you reach your goal you can drop out of the program or you can go on to achieve further goals, like education or developing skills you'd like to have, their mentors have told us at meetings.
But what if someone is unable to express any personal goals, has lost the spark to want to achieve something? It's another challenge, another way to look at recovery. You can't recover if you don't have any goals, can you?
There's a very good discussion of goals and how to draw someone out to learn to express them in an article in the July 16 Weekly Highlights on a new website called Recovery to Practice. A shorter version starts below. It's written by Larry Davidson, PhD, and Priscilla Ridgway, PhD, of Yale Department of Psychiatry. It rings true because we don't find our children or their friends in the system talking about goals. They've either given up or never were inspired to shoot for realistic goals. Why hasn't this been addressed before this?
(Davidson and Ridgway:) “This question is raised often by providers who are concerned that the people they work with have given up on whatever hopes, dreams, or aspirations they may have had earlier in life or who have been met with an initial blank stare or a shrug. The process of identifying and setting personal goals provides the foundation for recovery‐oriented practice, however. The question of whether or not people have such goals, therefore, is important.
“Restoring hope--Has this person perhaps become demoralized over time due to repetitive experiences of failures and losses that have been due to mental illness, stigma or discrimination, or a combination of both? Has the person lost hope as a result?
“It can be extremely difficult to have a mental illness, and extremely challenging to carry on one’s life in the face of it. It also may be hard to keep picking up the pieces time and time again when things fall apart, or to continue to believe that the future might be any better than a bleak or desperate present. The presence of a basic sense of hope is crucial to a person identifying any goals for the future. When hope has been lost, it can and must be restored as an essential basis for the person’s active engagement in recovery, and in the central role of identifying and pursuing personally meaningful goals.
“The restoration of hope can come about in a variety of ways, including through the activation of spirituality and faith, experiences of pleasure, and supportive and inspiring social relationships. When a person has lost hope and/or faith, it is crucial that other people continue to carry hope for that person until a time that he or she begins once again to believe that life can get better. Peer staff, who can provide tangible and credible evidence of the possibility of recovery, can be especially effective in instilling hope through their function as role models.
“Regaining interests--It is possible that through the combination of socialization and the lack of means to pursue their interests, people may lose any sense of what they might find interesting or enjoyable. In this case, helping the person to get back in touch with what interested him or her, or what he or she enjoyed, prior to becoming ill may be a useful place to begin the process of re‐igniting or” jump starting” his or her passion. There also is an array of tools, including interests and strengths assessments, that might help the person to recall those things that he or she had found pleasurable or meaningful in the past.
“Finally, there can be no substitute for actual life experience in re‐igniting, or eliciting for the first time, a person’s interest,” Davidson and Ridgway point out. “For some people, simply talking about participating in an activity is just as likely to raise anxiety and introduce doubts as it is to whet his or her appetite for involvement. Especially for people who have become accustomed to viewing life as if from a distance, as something that happens primarily to other people, it may require both encouraging and accompanying the person for him or her to feel comfortable trying new things."
The authors go on to discuss the possibility of co-occurring depression and achieving trust so the person is comfortable enough to share personal information. These and other useful insights are found on the website: http://www.dsgonline.com/rtp/resources.html. (Roy Neville)
Recovery in psychiatry--part 2
Idealism and optimism at the heart of the recovery movement
The recovery movement in psychiatry is sweeping the day. The state commissioner of mental health calls for a transformation in services to grant mentally ill people a higher level of self-esteem, rights and independence. National policy making bodies like SAMHSA and the Center for Mental Health Services finally come on board with financing for recovery models. The consumer movement is elated off its rocking horse. The state, with little money of its own but a mandate to capture federal Medicaid money, swoops down on provider programs like the social club and continuing day treatment in Schenectady to force their conversion to PROS, which stands for personal recovery oriented services.
The idealists and dreamers are finding full expression in many areas of modern life--like health care, in psychology, how we spend money, in military planning. It's rubbed off in the mistakes they've made, in the false cheerfulness we see in the world around us. People want to buoy each other up when illness strikes a friend, saying things they don't believe, like “you'll get better soon.” They make foolish investments and buy houses without enough collateral to pay for them when the going gets tough. Businessmen, thinking the world has a rosy glow to it, have sunk us in wasteful practices with their easy deals and careless mortgage lending. They refused to face reality.
How do I know? From what I read, it's a matter of ideology. Americans are cheerful people, who think positively, but not often realistically when we have to be. We don't want to think the worst about anybody or anything. We're compulsively optimistic, it's ingrained in us by our culture to look on the bright side of everything. We can't do otherwise than tell sick people they'll get better soon, greet people we don't know with a smile, and try to make others feel better.
That's called positive thinking and where it goes wrong is in the excesses. Read Barbara Ehrenreich's book, “Bright Sided,” about the extravagant way our culture perceives happiness and a better life as an entitlement for all. She claims “the relentless promotion of positive thinking has undermined America.” She writes that in this idealistic age churches preach that you only have to want something to get it because God wants you to prosper. And when she went down with breast cancer recently, she was told she had to battle hard against it in order to join the hallowed body of survivors. A man suffering with prostate cancer was told it was God's will for him to get cancer whether he survived or not. For those not hopeful enough there is plenty of self-blame.
Some of this irrational exuberance naturally has come over to the recovery trends in mental health.
Remission, not recovery
Along the way, the people who promote the recovery movement in psychiatry have found a way to overcome the medical profession's negative thinking about mental patients. That feeling prevailed, according to the movement, as a staple view for some time, labeled the “clinicians illusion.” It was widely held that patients were doing poorly in between visits when they weren't seeing them. Instead, writes Larry Davidson, PhD, a Yale psychologist and lead author of the new website Recovery to Practice, “the evidence suggests that many people recover over time and that when people drop out of treatment,they often are doing better than we might have expected.”
In his Weekly Highlight column recently, Davidson tells how a workgroup of patients, caregivers and clinicians tackled this by introducing the concept of remission of symptoms. The work group decided that a sizable number of patients sustained periods of symptomatic relief and improved functioning, disrupted by episodes of recurrence or relapse. They called these “periods of remission.” Davidson says there is increasing recognition that such improvements are common.
Thus, the “clinician's illusion” has been turned upside down and given way to the concept of remission. If you're in remission you're part way to recovery. Remission means the worst symptoms have gone away and your functioning is better. But it's a long shot from being free of symptoms. There are still people out there with schizophrenia and bipolar who are on the streets and in shelters and in jail and prisons and repeatedly visit emergency rooms. They have periods of remission, too, but they're not moving ahead toward recovery.
Recovery would involve a more demanding and longer term phenomenon in which a person is relatively free of disease and has the ability to function in the community, Davidson writes. He believes that's possible for some people. He cites the Harding study in Vermont years ago as evidence that long- term hospitalized patients can “recover.” But these were older folks and they were moved to serene farm-like villages in the country. Would they have met a different fate in New York City?
I don't see full recovery for people with schizophrenia. I see them "in recovery" or "in remission". Of course, we want them to make it. I remember my friend at a NAMI national meeting years ago confessing that he and his wife felt they gained sensitivity and understanding in bringing up a mentally disabled child. “But I really do wish it was happening to someone else and not me,” he added. (Roy Neville)
The recovery movement in psychiatry is sweeping the day. The state commissioner of mental health calls for a transformation in services to grant mentally ill people a higher level of self-esteem, rights and independence. National policy making bodies like SAMHSA and the Center for Mental Health Services finally come on board with financing for recovery models. The consumer movement is elated off its rocking horse. The state, with little money of its own but a mandate to capture federal Medicaid money, swoops down on provider programs like the social club and continuing day treatment in Schenectady to force their conversion to PROS, which stands for personal recovery oriented services.
The idealists and dreamers are finding full expression in many areas of modern life--like health care, in psychology, how we spend money, in military planning. It's rubbed off in the mistakes they've made, in the false cheerfulness we see in the world around us. People want to buoy each other up when illness strikes a friend, saying things they don't believe, like “you'll get better soon.” They make foolish investments and buy houses without enough collateral to pay for them when the going gets tough. Businessmen, thinking the world has a rosy glow to it, have sunk us in wasteful practices with their easy deals and careless mortgage lending. They refused to face reality.
How do I know? From what I read, it's a matter of ideology. Americans are cheerful people, who think positively, but not often realistically when we have to be. We don't want to think the worst about anybody or anything. We're compulsively optimistic, it's ingrained in us by our culture to look on the bright side of everything. We can't do otherwise than tell sick people they'll get better soon, greet people we don't know with a smile, and try to make others feel better.
That's called positive thinking and where it goes wrong is in the excesses. Read Barbara Ehrenreich's book, “Bright Sided,” about the extravagant way our culture perceives happiness and a better life as an entitlement for all. She claims “the relentless promotion of positive thinking has undermined America.” She writes that in this idealistic age churches preach that you only have to want something to get it because God wants you to prosper. And when she went down with breast cancer recently, she was told she had to battle hard against it in order to join the hallowed body of survivors. A man suffering with prostate cancer was told it was God's will for him to get cancer whether he survived or not. For those not hopeful enough there is plenty of self-blame.
Some of this irrational exuberance naturally has come over to the recovery trends in mental health.
Remission, not recovery
Along the way, the people who promote the recovery movement in psychiatry have found a way to overcome the medical profession's negative thinking about mental patients. That feeling prevailed, according to the movement, as a staple view for some time, labeled the “clinicians illusion.” It was widely held that patients were doing poorly in between visits when they weren't seeing them. Instead, writes Larry Davidson, PhD, a Yale psychologist and lead author of the new website Recovery to Practice, “the evidence suggests that many people recover over time and that when people drop out of treatment,they often are doing better than we might have expected.”
In his Weekly Highlight column recently, Davidson tells how a workgroup of patients, caregivers and clinicians tackled this by introducing the concept of remission of symptoms. The work group decided that a sizable number of patients sustained periods of symptomatic relief and improved functioning, disrupted by episodes of recurrence or relapse. They called these “periods of remission.” Davidson says there is increasing recognition that such improvements are common.
Thus, the “clinician's illusion” has been turned upside down and given way to the concept of remission. If you're in remission you're part way to recovery. Remission means the worst symptoms have gone away and your functioning is better. But it's a long shot from being free of symptoms. There are still people out there with schizophrenia and bipolar who are on the streets and in shelters and in jail and prisons and repeatedly visit emergency rooms. They have periods of remission, too, but they're not moving ahead toward recovery.
Recovery would involve a more demanding and longer term phenomenon in which a person is relatively free of disease and has the ability to function in the community, Davidson writes. He believes that's possible for some people. He cites the Harding study in Vermont years ago as evidence that long- term hospitalized patients can “recover.” But these were older folks and they were moved to serene farm-like villages in the country. Would they have met a different fate in New York City?
I don't see full recovery for people with schizophrenia. I see them "in recovery" or "in remission". Of course, we want them to make it. I remember my friend at a NAMI national meeting years ago confessing that he and his wife felt they gained sensitivity and understanding in bringing up a mentally disabled child. “But I really do wish it was happening to someone else and not me,” he added. (Roy Neville)
Wednesday, July 21, 2010
Recovery in psychiatry--part 1
The new mantra of recovery
So much we read nowadays in psychiatry has to do with the recovery model, moving away from doctors recommending disease treatments to asking patients what they want from treatment and discussing ways to meet those goals. It's turning the field of psychiatry topsy turvy.
Patient advocacy groups have been pushing this for a long time. The recovery focused movement has won the day, points out an article in Psychiatric News last November. The President's Freedom Commission on Mental Health endorsed the recovery approach back in 2003 when it called for a “fundamental transformation of the nation's approach to mental health care.” And there have been a spate of articles, conferences, speeches and webinars since then, some from the highest perches in the land in favor of converting to the new religion of recovery oriented services.
Now SAMHSA, the Substance Abuse and Mental Health Services Administration, has begun issuing guidelines, moving the educational concept of recovery more to specific instructions for psychiatrists to integrate recovery models into their practices. This training is going on now and is causing professionals to rethink entirely how they provide care, right down to what types of questions they need to ask patients.
The idea is to focus less on a remission of symptoms and more on helping patients overcome the effects of mental illness on their lives, the new gurus explain. This includes difficulties they have with employment, housing, and a lack of hope about their future. The new movement has both adherents and critics. It is behind the thrust in NY State to impose PROS (personal recovery oriented services) on existing networks of community outpatient clinics, day treatment and social club programs here and elsewhere.
What do they mean by recovery?
There's a debate about what anybody means by recovery—is it measurable and lasting? What's the evidence for that? Larry Davidson is a PhD psychologist from Yale who writes for a new website called Recovery to Practice. He addresses these problems quite admirably. In a column June 11 he writes how we have held out hope for a 'magic bullet' to make the illness go away and restore everything to normalcy. But instead, “What we have learned over the past couple of decades is that the truth lies somewhere else. Mental illnesses are not necessarily permanent but even the most evidence-based of practices in mental health are limited in their effectiveness.”
He points out that recent studies have shown that “newer psychiatric medicines are not that much better than the older ones and their side effects are still onerous. It remains the case that only 70% of people with a serious mental illness will derive any relief from these medications and the benefits are limited to only one domain of symptoms—primarily the so-called positive symptoms of hallucinations and delusions—having little to no impact on the more disabling aspects of the disease.” And as noted elsewhere, “treatments do not cure schizophrenia or fully ameliorate symptoms and problems for the majority of affected individuals.”
So where does recovery come in? Davidson tells us: “Recovery, as it turns out, has more to do with what the person with the illness does to contain and minimize the intrusions of the illness than with what professionals do to treat it. One thing people with serious mental illnesses can do is to take the medications prescribed for their condition by mental health professionals. But this is only one thing that they can do among many others, and most likely is not the most effective thing they can do, at least for those people for whom the medications are very limited in efficacy.
“Recovery also has to do with all of those other things people can do, and may need to do in addition to taking prescribed medications. Recovery also has to do with how people go about leading their lives in the presence of, or despite, serious mental illness.
Davidson makes a surprising assessment. He writes: “The most robust evidence base for interventions targeting serious mental illnesses are not for the traditional treatments of medication or psychotherapies that were aimed at eliminating the illness. On the contrary, what mattered most “were those interventions that supported people in participating in the community activities of their choice, in occupying normal adult roles, while they continue to have a mental illness.
This suggests to him that “the most effective breakthroughs in practice for people with serious mental illnesses since the introduction of chlorpromazine in the 1950s have not been in the development of new and better medications but in development of assertive community treatment and the related psychiatric rehabilitation practices of supported housing and supported employment. What these advances have taught us,” he says, “ is that it may be less difficult for people to figure out how to live with a mental illness than to be rid of it altogether. While the mental health field has had limited success in treating the illness, many people have themselves found ways to live with it and some to eventually recovery from it fully.”
These are persuasive arguments for the recovery theorists. They leave out some points. They still talk in generalities. We see our adult children doing well for some time and then suddenly, without notice, falling back into the throes of their disease, perhaps hospitalized, losing a job, pulling out of activities they enjoyed. There isn't any easy explanation—is the medicine not working or has his body worn off its effects? We should expect something like this, it happens with other diseases. But it keeps us on edge over a lifetime that true recovery in schizophrenia or major depression doesn't happen. Nobody gets a free bill of health without a lifetime of checkups and staying on the right medicines. And, we think, symptoms are more manageable with the aid of a steady counselor, trusting friend, supportive family and a good place to live. Those seem to be essentials whether you buy into the new recovery models or not. (Roy Neville)
So much we read nowadays in psychiatry has to do with the recovery model, moving away from doctors recommending disease treatments to asking patients what they want from treatment and discussing ways to meet those goals. It's turning the field of psychiatry topsy turvy.
Patient advocacy groups have been pushing this for a long time. The recovery focused movement has won the day, points out an article in Psychiatric News last November. The President's Freedom Commission on Mental Health endorsed the recovery approach back in 2003 when it called for a “fundamental transformation of the nation's approach to mental health care.” And there have been a spate of articles, conferences, speeches and webinars since then, some from the highest perches in the land in favor of converting to the new religion of recovery oriented services.
Now SAMHSA, the Substance Abuse and Mental Health Services Administration, has begun issuing guidelines, moving the educational concept of recovery more to specific instructions for psychiatrists to integrate recovery models into their practices. This training is going on now and is causing professionals to rethink entirely how they provide care, right down to what types of questions they need to ask patients.
The idea is to focus less on a remission of symptoms and more on helping patients overcome the effects of mental illness on their lives, the new gurus explain. This includes difficulties they have with employment, housing, and a lack of hope about their future. The new movement has both adherents and critics. It is behind the thrust in NY State to impose PROS (personal recovery oriented services) on existing networks of community outpatient clinics, day treatment and social club programs here and elsewhere.
What do they mean by recovery?
There's a debate about what anybody means by recovery—is it measurable and lasting? What's the evidence for that? Larry Davidson is a PhD psychologist from Yale who writes for a new website called Recovery to Practice. He addresses these problems quite admirably. In a column June 11 he writes how we have held out hope for a 'magic bullet' to make the illness go away and restore everything to normalcy. But instead, “What we have learned over the past couple of decades is that the truth lies somewhere else. Mental illnesses are not necessarily permanent but even the most evidence-based of practices in mental health are limited in their effectiveness.”
He points out that recent studies have shown that “newer psychiatric medicines are not that much better than the older ones and their side effects are still onerous. It remains the case that only 70% of people with a serious mental illness will derive any relief from these medications and the benefits are limited to only one domain of symptoms—primarily the so-called positive symptoms of hallucinations and delusions—having little to no impact on the more disabling aspects of the disease.” And as noted elsewhere, “treatments do not cure schizophrenia or fully ameliorate symptoms and problems for the majority of affected individuals.”
So where does recovery come in? Davidson tells us: “Recovery, as it turns out, has more to do with what the person with the illness does to contain and minimize the intrusions of the illness than with what professionals do to treat it. One thing people with serious mental illnesses can do is to take the medications prescribed for their condition by mental health professionals. But this is only one thing that they can do among many others, and most likely is not the most effective thing they can do, at least for those people for whom the medications are very limited in efficacy.
“Recovery also has to do with all of those other things people can do, and may need to do in addition to taking prescribed medications. Recovery also has to do with how people go about leading their lives in the presence of, or despite, serious mental illness.
Davidson makes a surprising assessment. He writes: “The most robust evidence base for interventions targeting serious mental illnesses are not for the traditional treatments of medication or psychotherapies that were aimed at eliminating the illness. On the contrary, what mattered most “were those interventions that supported people in participating in the community activities of their choice, in occupying normal adult roles, while they continue to have a mental illness.
This suggests to him that “the most effective breakthroughs in practice for people with serious mental illnesses since the introduction of chlorpromazine in the 1950s have not been in the development of new and better medications but in development of assertive community treatment and the related psychiatric rehabilitation practices of supported housing and supported employment. What these advances have taught us,” he says, “ is that it may be less difficult for people to figure out how to live with a mental illness than to be rid of it altogether. While the mental health field has had limited success in treating the illness, many people have themselves found ways to live with it and some to eventually recovery from it fully.”
These are persuasive arguments for the recovery theorists. They leave out some points. They still talk in generalities. We see our adult children doing well for some time and then suddenly, without notice, falling back into the throes of their disease, perhaps hospitalized, losing a job, pulling out of activities they enjoyed. There isn't any easy explanation—is the medicine not working or has his body worn off its effects? We should expect something like this, it happens with other diseases. But it keeps us on edge over a lifetime that true recovery in schizophrenia or major depression doesn't happen. Nobody gets a free bill of health without a lifetime of checkups and staying on the right medicines. And, we think, symptoms are more manageable with the aid of a steady counselor, trusting friend, supportive family and a good place to live. Those seem to be essentials whether you buy into the new recovery models or not. (Roy Neville)
Sunday, June 6, 2010
Why PROS won‘t help people with schizophrenia
Those left out of the state programs will be the outcasts
PROS is “a comprehensive recovery oriented program for individuals with severe and persistent mental illness,” the NYS Office of Mental Health’s guidelines state. “The goal is to integrate treatment, support and rehabilitation in a manner that facilitates the individual’s recovery.” Yep, the state’s agents claim that people with serious mental illness like schizophrenia are going to recover. If you conceive of recovery as holding your own with a government paid income, government provided housing and government health insurance, plus regular visits to doctors and counselors, and perhaps some friends and family around to help support you, and a pretty strong constitution to begin with, then you’ll see recovery.
They used to say the odds were 50-50 for recovery of any kind from schizophrenia, but they’re better now with better medicine and the awakening of consciousness that people can improve. And there are far more community mental health services available plus some housing for the same kinds of patients who didn’t do well in the old days. This is after more than 50 years of emptying out the state hospitals and 45 years since passage of the Community Mental Health Centers Act under President Kennedy.
PROS is a newcomer, although other counties were pushed into it by the state three or four years ago as demonstrations. It’s now beating at the door of the Ellis Hospital-run programs here--the psychosocial club and continuing day treatment center, which are to be consolidated downtown and made smaller, and the outpatient mental health clinic, which is said to face restructuring. That may hit here by end of summer, when the Ellis clinicians will be ordered to take on broader roles such as providing benefits counseling and drug-addiction counseling. Conversion of local community mental health programs and retraining of staff is going on all over NYS, driven almost entirely by the state’s ability to access 50 percent federal dollars for PROS under a Medicaid waiver known as the Rehabilitation option.
Rehabilitation is synonymous with PROS and that makes it easier to understand. For the first time psychosocial clubs like Ellis’s Collage, vocational support programs, on-site rehabilitation programs like Pie in the Sky Bakery, run by RSS in Albany, and Intensive Psychiatric Rehabilitation Treatment (IPRT) programs like the one we had on Van Vranken Avenue till two years ago will be required to convert to PROS, while continuing day treatment programs have the option of doing so. Ellis claims it can’t afford to keep the CDT running and so is ready to cash in the chips and turn it into a PROS to receive a higher payment rate from the state. The social club is a state-paid Community Support Services program that can’t continue under CSS and so the hospital plans to shorten it into an afternoon program, also part of PROS. That much has been revealed already to parents and consumers of services at local meetings in the past month. Many of those at the clubhouse are infuriated and are rallying to keep it open, even asking Ellis management to cover the modest costs of running it.
There are many problems with the changeover. A main one is that the state isn’t being candid about what happens to those who don’t fit into the new programs. PROS has some tight regulations for attendance and performance of those in its four main service components, known as community rehabilitation, intensive rehabilitation, ongoing rehabilitation and clinic restructuring, the latter an option. You’d think they’d be more imaginative when naming three of these efforts, which seem mostly overlapping. The point is that the state has a responsibility to all the people with serious mental illness, just as PROS wants to deal with, plus those with lesser versions of illness, such as personality disorders and milder forms of anxiety and depression. It’s true some of those folks, particularly if they’re young and otherwise healthy, can be treated successfully and live relatively normal lives going to work and raising a family. We know some people who do well despite their illness.
But there is a large number of people who do indeed have severe illness, as I wrote recently to top members of the state Office of Mental Health. I said I believe they will either drop out voluntarily or be disqualified. The state envoys have expressed a low regard for the day treatment and social club programs that they say haven’t rehabilitated anyone. But I feel it’s the nature of serious mental illness that is behind the lack of their advancement and slowness to recover. That is, illnesses like schizophrenia are very severe for each of these people, over a lifetime, and the odds are that most will not fit into a rigorous rehabilitation model. Some will--and we want to give them a chance to work harder at their own self-improvement.
For the others, they need a secure place to live and interact with others in the community, and that’s what community support services has done for them. And they won’t be rushed or coerced into something more than that. We are glad they are not in a hospital or a nursing home. We are saving a great deal of money through the community mental health systems. These people have lots of physical ailments, some are elderly, many are overweight, some are too sick to show up for appointments regularly. How are they going to fit the PROS model? That’s why I urged the leaders to reconsider the rules they are forcing on us in Schenectady and Albany and all over the state.
The state OMH News even ran an article in July 2009 quoting Commissioner Michael Hogan and pointing out: “People with schizophrenia often do not receive treatment until the disease is already well-established, with recurrent episodes of psychosis resulting in costly multiple hospitalizations and disabilities that can last for decades. People with the illness are over-represented on disability rolls, and among the homeless and imprisoned. Their unemployment rate is more than 70 perecent, and the lifetime suicide rate for people with the disease is over 10 percent. People with schizophrenia occupy approximately 25 percent of the nation’s hosptial beds.”
Now I ask you, how are those folks going to keep their place in the classrooms and counseling sessions that are in store for them? One of the PROS on Long Island has even signed up its clients for two years of job-oriented lessons and planning, with state agents expecting them all to graduate into a job after two years. It’s fanciful.
The article does cite the fact that a number of research projects have signaled that early intervention--combining medical treatment with consumer and family education, and emphasizing a transition to a productive adult life--holds great promise in reducing the disability that is associated with schizophrenia. But that may be limited to some of our more privileged members. And if the programs have no place for the outcasts, those with the most disabling illnesses and behavior, what kind of a public mental health system is the state office running? A lot of people are going to be left out and who takes care of them? And what about all those programs the providers have set up over the years--affirmative businesses and clubhouses and IPRT and enclaves in industry,for example, that have proven successful and now are being dumped by NY State. It hurts to see the state office dismantle the best programs we have in Schenectady and Albany, that have worked well for so many. They arose out of the dreams of their leaders and took years to fully develop.
We’ve learned over a lifetime that as the services close, more of the tragedies and emergencies involving people with mental and behavioral disorders appear. There’s bound to be more homelessness, suicide attempts and emergency room cases, men hanging around downtown and police pickups. With the state breathing on their necks, the counties have pushed the providers of the “softer” programs like day treatment and social clubs to knuckle under and convert to PROS. They are willing to close what they have--good programs and bad, and they’ve simply taken the money. It’s sad to see it happen, both for the providers and the families and consumers who attend the programs. The most vulnerable will get left out. An awful reminder that what services we have can be so easily taken away. (Roy Neville)
PROS is “a comprehensive recovery oriented program for individuals with severe and persistent mental illness,” the NYS Office of Mental Health’s guidelines state. “The goal is to integrate treatment, support and rehabilitation in a manner that facilitates the individual’s recovery.” Yep, the state’s agents claim that people with serious mental illness like schizophrenia are going to recover. If you conceive of recovery as holding your own with a government paid income, government provided housing and government health insurance, plus regular visits to doctors and counselors, and perhaps some friends and family around to help support you, and a pretty strong constitution to begin with, then you’ll see recovery.
They used to say the odds were 50-50 for recovery of any kind from schizophrenia, but they’re better now with better medicine and the awakening of consciousness that people can improve. And there are far more community mental health services available plus some housing for the same kinds of patients who didn’t do well in the old days. This is after more than 50 years of emptying out the state hospitals and 45 years since passage of the Community Mental Health Centers Act under President Kennedy.
PROS is a newcomer, although other counties were pushed into it by the state three or four years ago as demonstrations. It’s now beating at the door of the Ellis Hospital-run programs here--the psychosocial club and continuing day treatment center, which are to be consolidated downtown and made smaller, and the outpatient mental health clinic, which is said to face restructuring. That may hit here by end of summer, when the Ellis clinicians will be ordered to take on broader roles such as providing benefits counseling and drug-addiction counseling. Conversion of local community mental health programs and retraining of staff is going on all over NYS, driven almost entirely by the state’s ability to access 50 percent federal dollars for PROS under a Medicaid waiver known as the Rehabilitation option.
Rehabilitation is synonymous with PROS and that makes it easier to understand. For the first time psychosocial clubs like Ellis’s Collage, vocational support programs, on-site rehabilitation programs like Pie in the Sky Bakery, run by RSS in Albany, and Intensive Psychiatric Rehabilitation Treatment (IPRT) programs like the one we had on Van Vranken Avenue till two years ago will be required to convert to PROS, while continuing day treatment programs have the option of doing so. Ellis claims it can’t afford to keep the CDT running and so is ready to cash in the chips and turn it into a PROS to receive a higher payment rate from the state. The social club is a state-paid Community Support Services program that can’t continue under CSS and so the hospital plans to shorten it into an afternoon program, also part of PROS. That much has been revealed already to parents and consumers of services at local meetings in the past month. Many of those at the clubhouse are infuriated and are rallying to keep it open, even asking Ellis management to cover the modest costs of running it.
There are many problems with the changeover. A main one is that the state isn’t being candid about what happens to those who don’t fit into the new programs. PROS has some tight regulations for attendance and performance of those in its four main service components, known as community rehabilitation, intensive rehabilitation, ongoing rehabilitation and clinic restructuring, the latter an option. You’d think they’d be more imaginative when naming three of these efforts, which seem mostly overlapping. The point is that the state has a responsibility to all the people with serious mental illness, just as PROS wants to deal with, plus those with lesser versions of illness, such as personality disorders and milder forms of anxiety and depression. It’s true some of those folks, particularly if they’re young and otherwise healthy, can be treated successfully and live relatively normal lives going to work and raising a family. We know some people who do well despite their illness.
But there is a large number of people who do indeed have severe illness, as I wrote recently to top members of the state Office of Mental Health. I said I believe they will either drop out voluntarily or be disqualified. The state envoys have expressed a low regard for the day treatment and social club programs that they say haven’t rehabilitated anyone. But I feel it’s the nature of serious mental illness that is behind the lack of their advancement and slowness to recover. That is, illnesses like schizophrenia are very severe for each of these people, over a lifetime, and the odds are that most will not fit into a rigorous rehabilitation model. Some will--and we want to give them a chance to work harder at their own self-improvement.
For the others, they need a secure place to live and interact with others in the community, and that’s what community support services has done for them. And they won’t be rushed or coerced into something more than that. We are glad they are not in a hospital or a nursing home. We are saving a great deal of money through the community mental health systems. These people have lots of physical ailments, some are elderly, many are overweight, some are too sick to show up for appointments regularly. How are they going to fit the PROS model? That’s why I urged the leaders to reconsider the rules they are forcing on us in Schenectady and Albany and all over the state.
The state OMH News even ran an article in July 2009 quoting Commissioner Michael Hogan and pointing out: “People with schizophrenia often do not receive treatment until the disease is already well-established, with recurrent episodes of psychosis resulting in costly multiple hospitalizations and disabilities that can last for decades. People with the illness are over-represented on disability rolls, and among the homeless and imprisoned. Their unemployment rate is more than 70 perecent, and the lifetime suicide rate for people with the disease is over 10 percent. People with schizophrenia occupy approximately 25 percent of the nation’s hosptial beds.”
Now I ask you, how are those folks going to keep their place in the classrooms and counseling sessions that are in store for them? One of the PROS on Long Island has even signed up its clients for two years of job-oriented lessons and planning, with state agents expecting them all to graduate into a job after two years. It’s fanciful.
The article does cite the fact that a number of research projects have signaled that early intervention--combining medical treatment with consumer and family education, and emphasizing a transition to a productive adult life--holds great promise in reducing the disability that is associated with schizophrenia. But that may be limited to some of our more privileged members. And if the programs have no place for the outcasts, those with the most disabling illnesses and behavior, what kind of a public mental health system is the state office running? A lot of people are going to be left out and who takes care of them? And what about all those programs the providers have set up over the years--affirmative businesses and clubhouses and IPRT and enclaves in industry,for example, that have proven successful and now are being dumped by NY State. It hurts to see the state office dismantle the best programs we have in Schenectady and Albany, that have worked well for so many. They arose out of the dreams of their leaders and took years to fully develop.
We’ve learned over a lifetime that as the services close, more of the tragedies and emergencies involving people with mental and behavioral disorders appear. There’s bound to be more homelessness, suicide attempts and emergency room cases, men hanging around downtown and police pickups. With the state breathing on their necks, the counties have pushed the providers of the “softer” programs like day treatment and social clubs to knuckle under and convert to PROS. They are willing to close what they have--good programs and bad, and they’ve simply taken the money. It’s sad to see it happen, both for the providers and the families and consumers who attend the programs. The most vulnerable will get left out. An awful reminder that what services we have can be so easily taken away. (Roy Neville)
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